Update Summer 2017 Issue 13

Summer 2017 Issue 13

THE MAGAZINE FROM KIDNEY RESEARCH UK

OFFERING HOPE TO CHILDREN ON DIALYSIS PAGE 04

New Kidney Research UK mascot Beanie!

Charity merger boost for paediatric research

03

06

Drink up – why hydration is so important for kidney health

08

Welcome!

Morrisons Foundation

You won’t fail to spot the theme of children in this issue of Update. Paediatric research has been funded by Kidney Research UK for many years and the forthcoming merger with Kids Kidney Research is great news for accelerating our knowledge of childrens’ kidney diseases. In our Big Interview on page 6, the esteemed paediatric nephrologist Dr Dick Trompeter, chairman of Kids Kidney Research tells us about the charity’s history and the reasons behind the merger. We also have a fascinating insight into the outcomes of the trial into a newer type of dialysis for children from Dr Rukshana Shroff at Great Ormond Street Hospital on page 4.

Kidney Research UK was delighted to receive a major grant from the Morrisons Foundation.

The £20,000 award has been made to support patients with kidney diseases across the UK.

Fingers crossed by the time this reaches you the sun will have started to shine again this summer. It doesn’t seem that long ago since we had scorching temperatures. With the hot weather in mind see if you can pick up any tips from our feature on hydration and the importance of managing your fluid levels. This is on pages 8-9.

We often remind ourselves how lucky we are to work with such a brilliant range of people, from superbly motivated supporters like our wonderful volunteer Helen Rogerson (see page 14), fundraiser extraordinaire Sam Blackburn and his colleagues at Exclusive Networks (see page 19), to the talented Dr Joanna Hester on page 10, who holds our most senior Fellowship. The kidney community is warm, hard working and full of fight. We hope this comes across in our magazine. Thank you for being part of this community and for your continued support.

Happy reading!

Rosie

Rosie Loft, Editor pressoffice@kidneyresearchuk.org

Contributors Allison Parkinson Angela Bolton Harriet Williams

Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ

Designed by www.adeptdesign.co.uk

Tel: 0300 303 1100 www.kidneyresearchuk.org

Find out more: www.kidneyresearchuk.org

Kidney Research UK’s patient engagement programme provides a UK-wide resource for kidney patients to come together, often at a local level, into small groups or networks which provide opportunities for patients to learn more about and discuss research.

The cheque was presented on behalf of the Morrisons Foundation by Tracey Rapley, Community Champion at the Lincoln Road Peterborough store, who said: “We were delighted to present this cheque to Kidney Research UK, which funds research into finding cures for kidney diseases.”

London Bridges Walk 2017 Hundreds of fabulous supporters young and old, joined in our London Bridges Walk to raise money for Kidney Research UK, on a beautiful day in July. Come and join us next year! Find out more here: www.kidneyresearchuk.org/get-involved/events/londonbridges

NEWSROUND // P03

Charity merger boost for kids research Kidney Research UK and Kids Kidney Research are in the process of formal merger.

Kids Kidney Research celebrates its 50th anniversary this year and has agreed with Kidney Research UK that combining forces will create an even stronger platform to drive innovation in understanding and treating childhood kidney diseases.

Both charities have long and distinguished histories in funding paediatric research to develop and improve the care and treatment of children with kidney disease. This new merger will launch a new £500,000 grants programme, dedicated to paediatric research.

New Kidney Research UK mascot Beanie!

Meet Beanie, our new Kidney Research UK mascot! Beanie made his debut at this year’s London Marathon and will appear at our future events and presentations.

Keep a look out!

Chief Executive of Kidney Research UK, Sandra Currie, added, “This union between the charities is very exciting and very good news for kidney patients. It is made extra special by the fact that the founders of Kids Kidney Research started out by fundraising for Kidney Research UK (then known as the National Kidney Research Fund). Now they are returning so that together we can combine our knowledge and resources to make the strongest possible impact on improving the lives of children with kidney disease.”

The merger is due to complete in September 2017, when Kids Kidney Research will formally close.

Turn to page 6 to read our ‘Big Interview’ with Dr Trompeter and page 4 to read about some of the paediatric research we are already funding.

Scotland plans to adopt opt out organ donation system Following public consultation, the Scottish Government intends to introduce legislation for a soft opt-out system of organ and tissue donation. This proposed new system aims to increase lifesaving organ transplants. Whilst the current system means a person has to actively opt in to be an organ donor after their death the new system assumes a person has agreed to donate their organs, unless they opt out during their lifetime.

Kidney Research UK will continue to support the move and the work we already do to increase awareness of organ donation in Scotland. There is an ongoing lack of available kidneys: currently more than 500 people are on the active kidney transplant waiting list in Scotland. Kidney disease is common in Scotland. Visit www.kidneyresearchuk.org to read more on this story.

Fright for Good this Halloween Support our new fundraising campaign! We are turning Halloween into a force for good by asking people to Fright for Good this October and have a spooktacular time for a good cause. From apple bobbing to pumpkin carving, ghoulish treating to fancy dressing, broomstick racing to zombie dancing, whatever your idea of fiendish fun, together we will say BOO! to kidney disease by raising a cauldron load of money to fund more vital research.

Register your interest at www.kidneyresearchuk.org/fright and we’ll let you know when you can sign up for your free fundraising pack.

Diary dates Dog Jog (Birmingham) Saturday 9 September Run 5km

Great North Run

Sunday 10 September Run 13.1 miles

Glasgow Bridges Walk Sunday 8 October Walk 7 miles

Dog Jog (London) Sunday 29 October Run 5km

KiltWalk (Various) Various Walk

To register for our events, call 0300 303 1100 or visit: www.kidneyresearchuk.org/ get-involved/events

Call our donation line: 0800 783 2973

HOW YOUR MONEY’S HELPED // P04

Study offers new hope to children on dialysis Kidney Research UK-funded research may have found a simple way to improve life expectancy and quality of life for children on dialysis.

Preliminary findings from a major international study have shown that a newer type of dialysis called haemodiafiltration (HDF) is better for children than conventional haemodialysis (HD) and the costs involved are virtually identical.

HDF can remove more kidney toxins than HD because it is able to filter out molecules of all sizes. The filtering process is also gentler on the body. HD tends to only filter out smaller molecules.

Kidney Research UK has invested £200,000 into the three-year project which is being led by Dr Rukshana Shroff and her team at Great Ormond Street Hospital in London.

The study involves 179 children on longterm dialysis from 28 renal centres in 10 countries. The children, aged between 5 and 20, received HD or HDF and were monitored for a year. Both groups were comparable in terms of age gender, race, underlying kidney disease and time spent on dialysis.

High resolution ultrasound equipment was used to study the children’s blood vessels in great detail. The team also monitored blood pressure, fluid control, growth, nutrition and quality of life.

Children with kidney disease face a lifetime of living with the condition. But if we can find ways to prevent the most severe and life-limiting complications of kidney failure in childhood, we can help to improve their futures.

Find out more: www.kidneyresearchuk.org

“Some children on HD die of heart disease in their 20s and 30s due to complications, including thickening of the arteries and accumulation of kidney toxins in the body,” says Dr Shroff. “HDF is shown to increase survival rates in adults by more than 30% and improve heart and blood vessel function. It’s more effective at removing kidney toxins and excess fluid and it’s also gentler on the body. We wanted to find out if it could be better for children too.”

The study has revealed some very interesting initial findings.

“We scanned the children’s blood vessels, looking for evidence of any thickening or stiffening of the arteries,” says Dr Shroff.

“We discovered that these vascular changes were increasing on conventional HD, but there was no further progression of these changes on HDF. This suggests that HDF can halt the progression of vascular damage in dialysis patients, whereas damage can be relentless and progress rapidly in children on conventional dialysis.

“We then went on to look at the patients in terms of why this should be happening. We found that fluid control was significantly better on HDF compared to conventional HD and that blood pressure was better controlled on HDF too.

“In addition, blood tests showed us that there was better control of phosphate and parathyroid hormone levels on HDF. These are both factors that are related to the progression of kidney and vascular damage in dialysis patients.

HOW YOUR MONEY’S HELPED // P05

Pranav’s story Pranav (now 17) is taking part in Dr Shroff’s study.

He has a kidney disease called Focal Segmental Glomerulosclerosis (FSGS).

Pranav went on haemodialysis when the condition caused one of his kidneys to fail. Unfortunately this made him feel very tired and he had no energy at all to concentrate in school or be able to take part in sport. The dialysis also gave him headaches and dizzy spells.

After two unsuccessful kidney transplants Pranav was started on HDF. He began to feel a lot better, with more energy and a big appetite.

The next step

“This finding is especially rewarding for me. In a much earlier study, also funded

by Kidney Research UK, I was able to show that phosphate and parathyroid hormone levels were bad for blood vessels and the heart. So I am really delighted that we now appear to have found a potential way to control them.”

Children and their families also completed questionnaires to describe their energy levels, sleep patterns and how they feel with different types of dialysis. The findings of these quality of life markers are currently being assessed.

“We hope that this study will make people sit up and pay attention,” says Dr Shroff.

“A lot of my paediatric nephrology colleagues used to say that there was no evidence to support the suggestion that HDF was a superior form of dialysis for children but we now have data to suggest that it is a better method. It can be performed in hospital three times a week, just like conventional HD, and the additional cost is extremely nominal. If HDF can produce better outcomes for children at an equivalent cost then it really is something we must think about.”

Dr Shroff and her team now aim to spend the next year discovering exactly why HDF appears to be a better form of dialysis for children. They also plan to investigate reasons for the feel-good factor often associated with this form of dialysis.

Pranav is now excited for the future.

He enjoys playing the drums with an orchestra and he hopes that with this new treatment he will continue to improve his drumming and be able to do new things, like learn to drive.

“A number of children have told us that they feel better on HDF but without knowing why,” says Dr Shroff.

“It may just be that some of the bad hormones and proteins in the body are cleared by HDF and that makes the person feel better and eat better. And if their appetite and nutrition improves, the nausea goes away, which would make them feel substantially better.”

There are currently 110 children in the UK who undergo regular dialysis. Most are on conventional haemodialysis. This study may lead to the eventual adoption of haemodiafiltration as the preferred type of dialysis for children across the UK. “I think this project highlights the importance of paediatric renal research,” says Dr Shroff.

“Children with kidney disease face a lifetime of living with the condition. But if we can find ways to prevent the most severe and life-limiting complications of kidney failure in childhood, we can help to improve their futures.”

Help us change more lives Help us say ‘yes’ to more groundbreaking research proposals like Dr Shroff’s – each one potentially holding the breakthrough that kidney patients have been waiting for.

Make a donation today at www.kidneyresearchuk.org/donate or call: 0800 783 2973 THANK YOU

Call our donation line: 0800 783 2973

THE BIG INTERVIEW // P06

Dr Dick Trompeter: Teaming up for a brighter renal future The merger of Kidney Research UK and Kids Kidney Research presents the charitable sector with an exceptional opportunity.

By joining forces and sharing expertise we hope to significantly improve the lives of children with kidney disease.

Paediatric renal specialist and Kids Kidney Research Chairman, Dr Dick Trompeter has been one of the driving forces behind the merger. He was an NHS consultant at Great Ormond Street Hospital for over 30 years and responsible for setting up the dialysis and kidney transplant programme there. Currently he is Emeritus Consultant Paediatric Nephrologist at Great Ormond Street and Honorary Reader in Paediatric Nephrology at the Institute of Child Health, London.

Find out more: www.kidneyresearchuk.org

THE BIG INTERVIEW // P07

Dr Trompeter continues to work as a consultant nephrologist and recently established the first transition clinic for teenagers and young adults with chronic nephrotic syndrome, based at The UCL Centre for Nephrology, Royal Free Hospital Campus in London.

His extensive clinical practice covers the whole range of kidney and bladder problems in infants and children, and his publications include more than 100 peer reviewed papers, clinical reviews and editorials.

We caught up with him recently to ask about his passion for children’s renal research and to find out why he feels now is the perfect time for both charities to merge.

Dr Claire Sharpe

By combining resources this part of the charitable sector can become bigger and better and ensure an even brighter future for paediatric renal research.

Q

How did you first become involved with Kids Kidney Research?

It all started back in the 1970s. I did a lot of my training in paediatric nephrology at Great Ormond Street Hospital and the Institute of Child Health. The charity, which was previously called the Kidney Research Aid Fund, was an in-house charity at the time, and supported the research work that many trainees, including me, undertook during our career progression.

Ever since its inception, it has been the only UK charity specifically targeting support for research work into kids with kidney disease.

When I became a trustee we opened the charity up nationally so that colleagues from around the UK could benefit from funding to support their paediatric research.

Q

The charity awards around £400,000 in grants every year.

What kind of projects do you support?

Our support has been very broad; we not only include areas of clinical and laboratory research, but also the surgery i.e. urology of paediatric kidney disease. Recently the charity became more involved in supporting projects with a social or psycho-social background (looking at how kidney disease can affect people’s lives and mental health), reflecting the breadth and depth of the speciality.

One major principle has always been funding junior researchers who are getting a foothold onto the ladder with projects that may be in their infancy, so called “pump priming”. This has been one of the strengths and unique aspects of the charity. KKR has also provided financial support for projects not necessarily considered to be conventional research i.e. open opportunity funding.

By combining financial support from a number of charities including KKR, the Young Persons Transition Clinic was established at The Royal Free Hospital, providing clinical and social support for young people aged 16 – 30 who have chronic kidney disease, principally nephrotic syndrome. Patients are seen by me, together with an adult nephrologist and a young adult worker who is skilled in supporting young people, particularly managing clinic attendance and supporting their educational and social needs. It has been an outstanding success.

Q

What attracted you to a career in paediatric nephrology?

As a medical student in the 1960s at Guy’s Hospital I was impressed and inspired by the outstanding people who taught me paediatrics, and adult renal medicine. By the time I graduated I had pretty much made the decision that I wanted to be a paediatrician.

There was also something mysterious and challenging about the kidney and the treatment of kidney disease that interested and attracted me and I thought a career plan trying to combine the two specialities was a reasonable goal.

Q

Kids Kidney Research marks its 50th anniversary this year. Why do you feel now is the right time to merge with Kidney Research UK? KKR is flourishing as a very small charity, shown by the income that we receive and the quality of research that we have been able to support over many years. The strength of the charity has depended on the hard work of a small number of irreplaceable volunteers and trustees. Finding new trustees for a small charity is difficult, and the increasing management responsibility demanded by the Charity Commission means that professional input has become essential.

Many of the basic science research themes are now common to paediatric and adult renal disease, in fact the majority of kidney disease probably originates in infancy or earlier. By working together with Kidney Research UK and combining resources this part of the charitable sector can become bigger and better and ensure an even brighter future for paediatric renal research.

There is no doubt that Kidney Research UK has the facilities, the staff and the professionalism to make this a success. It also recognises the powerhouse that our small charity brings. Consider that we have given around £0.5 million a year to research, that’s not bad! It has been an amazing example of how such a small charity with a limited number of people working really hard has succeeded.

The fact that we are merging in the 50th year of KKR’s life is a happy coincidence. I am extremely proud of this milestone – I think of this merger as a golden wedding and I want to thank everybody who has been involved in making this marriage a success.

FOR FURTHER UPDATES ON PAEDIATRIC RESEARCH WE ARE FUNDING, PLEASE VISIT WWW.KIDNEYRESEARCHUK.ORG

Call our donation line: 0800 783 2973

HEALTH & LIFESTYLE // P08

DRINK UP

- why hydration is so important for kidney health Drinking sufficient levels of fluid on a daily basis is an important part of kidney health. And it’s not just something we should be thinking about during the warmer summer months.

We are at the greatest risk of dehydration when we are too hot or too dry, have limited access to water or lose more water than usual. Warm or dry environments, such as centrally-heated homes, tend to increase our need for fluid. We can lose more fluid through sweating (due to exercise or hot climates), or through bouts of vomiting and diarrhoea.

The colour of our urine can be a clear indicator of whether we’re taking in enough fluids. We should aim to produce urine that’s straw coloured or paler but, if it’s any darker than this, it may suggest that we are dehydrated.

Dehydration, especially chronic dehydration, results in the production of urine which has a higher concentration of minerals and waste products. This can lead to the formation of crystals which can affect kidney function and contribute to certain kidney diseases, such as kidney stones.

Research suggests that drinking plain water, in particular, can have a potentially protective effect on kidney function. So how much water should an average person drink each day?

How much should we drink?

The NHS recommends that women should drink eight 200ml glasses and men should drink ten 200ml glasses of fluid per day. This is supported by European recommendations.

Drinking plenty of fluids helps the kidneys to clear sodium, urea and waste products from the body, potentially lowering the risk of developing chronic kidney disease, according to researchers in Australia and Canada.

However, everyone is different and the right level of fluid intake depends on a range of factors. These can include the amount and type of exercise we do, weather conditions and health considerations such as being pregnant or breast feeding. In addition, some people with kidney disease, especially those whose kidneys have stopped working and are on treatments such as dialysis, must monitor their fluid intake very carefully.

Find out more: www.kidneyresearchuk.org

If you’re on dialysis your daily fluid allowance is likely to be very restricted.

Taking in too much fluid can cause problems ranging from weight gain and swelling to fluid in the lungs and heart problems.

It can help to stick to pure water and avoid caffeinated, sweetened and alcoholic drinks which require even more fluid to allow the body to properly process the toxins and chemicals they contain. Other tips can include chewing ice or enjoying frozen fruits (remembering to measure their likely fluid content) and limiting your salt intake.

Do ask your healthcare team if it’s possible to adjust your dialysis solutions if you feel dehydrated during dialysis itself.

HEALTH & LIFESTYLE // P09

Need some inspiration?

If you sometimes struggle to meet these daily fluid totals, you’re certainly not alone. But there are simple ways to brighten up the humble glass of water. These include: c Adding a slice of orange, lemon or lime to cold or hot water c Infusing water with mint leaves or cucumber slices c Dropping in a few crushed cherries or berries c Freezing fruits such as grapes or small orange segments and using them as ice cubes

But, if you have kidney disease, always remember to speak to your health professionals before making any dietary changes.

Lemon and Ginger Baked Yoghurt Chicken with Fresh Curry Leaves Recipe supplied by Lawrence Keogh

Ingredients: c1 free range chicken portioned into 8 pieces (2 thighs, 2 drumsticks, 2 winglets and 2 breasts) c1 lemon juice plus zest (approx 50ml) c1 5g garlic c1 5g ginger Preparation time: c½ tsp of cumin seed 35 mins c¼ tsp ground coriander c½ fresh red chilli approx 5g c1 50g/100ml natural yoghurt c1 0 twists of black peppercorns c1 0 fresh curry leaves

Cooking time: approx 20/25 mins Serves 4

Preparation 1 Portion the chicken and remove the skin.

2 M ake incisions into the flesh with a sharp knife as this will help to make it cook quicker and also allow the spice to permeate right into the meat.

7

top tips to avoid dehydration

Fluid intake is important – whatever the weather. Here are seven top tips to help you ensure that you’re drinking enough each day:

1

Whilst all fluid counts towards your fluid intake, water is one of the healthiest choices when it comes to maintaining kidney health.

2

Sip water little and often.

3

Women should aim to drink eight 200ml glasses of fluid a day.

4

Men should aim to drink ten 200ml glasses of fluid a day.

5

During warmer weather conditions or when exercising strenuously you may need to drink more water than normal, due to fluid losses through sweating.

6

Track your urine colour – this should be straw coloured or paler. If it is any darker this, it is an indicator that you could be dehydrated.

7

Keep a bottle of water handy when you are on the move or exercising.

3 P lace all of the other ingredients, except the yoghurt, into a food processor and blend until fine.

KIDNEY STONES – THE FACTS Waste products from the blood are filtered out by the kidneys into the urine. When the concentration of these waste products in the urine is too high, they form crystals.

These crystals then build up in the kidneys to become kidney stones, also known as nephrolithiasis.

Once a kidney stone has formed, it will attempt to pass through the urinary system. Small stones may pass through without causing any problems, but large stones can block the ureters or urethra (the tubes connecting the kidneys to the bladder), causing severe pain and sometimes urinary tract infections.

Kidney stones can affect anyone, but men aged between 30 and 60 years old are most at risk. There are several factors which can contribute to kidney stone formation and dehydration is one. Keeping adequately hydrated is thought to help keep urine diluted, making the risk of kidney stone formation less likely.

4 R emove the spice mixture from blender and mix into the chicken thoroughly.

5 T hen add the yoghurt. Ideally, leave in the fridge for 24 hours.

6 P re-heat oven to 220 degrees and place chicken pieces on a foil-lined tray.

7 B ake for approx 20/25 mins.

8 R emove from the oven and serve with some plain rice.

Comments from renal dietician Harriet: This tasty recipe is suitable for people at any stage of kidney disease.

Chicken is a great source of protein. Protein is important for growth and repair of body cells and tissues.

Most people with kidney 10be advised problems will to eat a normal amount of protein; if you are receiving dialysis you may be advised to eat more. Ask to see your Renal Dietitian who will be able to provide specific advice for you.

Almost all of us need to cut down on the amount of salt that we eat. This is particularly important if you have kidney problems; cutting down on salt in your diet can help control blood pressure and reduce fluid retention.

This recipe is great as it contains no added salt and instead uses garlic, ginger and spices to flavour the food.

Call our donation line: 0800 783 2973

RESEARCHER PROFILE // P10

Joanna Hester Dr Joanna Hester is a senior postdoctoral researcher working in the Transplantation Research Immunology Group (TRIG) at The John Radcliffe Hospital in Oxford. Her research focuses on developing therapies that could prevent transplant rejection without the need for immunosuppression.

What are you up to at the moment?

I am particularly interested in the role of immune cells and in how the body copes with foreign tissue, in particular cells called regulatory T cells and myeloid suppressor cells, and how the mechanisms of immune tolerance can be utilised in renal transplant recipients to help prevent transplanted kidneys being rejected.

What do you do in your spare time when you’re not unlocking the mysteries of kidney disease?

A bit of everything: reading, running, walking, travelling, spending time with friends and family.

What was the last album you downloaded?

and the public, and also other scientists supported by Kidney Research UK.

What inspired you to go into research?

My dad used to buy “Wiedza i zycie”, a popular Polish science magazine, and a Polish edition of “Scientific American”, both of which have inspired my interest in molecular biology and science in general.

If you had to change careers what would you do?

I have been always interested in how society works and a question of nurture versus nature so sociology or sociobiology would be a very interesting avenue to explore.

Alternatively, I could run a tourist hut somewhere in the mountains.

Career highlight?

Together with my colleagues in the Transplantation Research Immunology Group, I have demonstrated that giving animal models human regulatory T cells is safe and efficient. That has allowed us to progress to the phase I clinical trial of cell therapy with regulatory T cells in kidney transplant recipients.

Best thing about your job?

It is definitely not a boring 9 to 5 job. It is intellectually stimulating, versatile and there is always a new challenge waiting.

What is the most important lesson life has taught you?

Enjoy what you have!

Great Big Flamingo Burning Moon by The Wave Pictures, although bought in an old-fashioned way as a CD.

Where did you last go on holiday?

I have just come back from a holiday in the lovely village of Northam in north Devon.

What was the last book you read/ film you watched?

I am currently reading “Homo Deus” by Yuval Noah Harari, a brilliant and stimulating book exploring the future of humankind.

Engaging with other scientists supported by Kidney Research UK at its annual Fellows Day conference

My current research

Who would be your ultimate dinner party guest?

Helping avoid transplant rejection using regulatory cells | £400,000 grant from Kidney Research UK

Steven Pinker – cognitive scientist and popular science author.

Transplantation is the most effective treatment for end-stage kidney failure.

However, organ rejection by the immune system remains a major risk.

Regulatory cells are part of the natural mechanisms which control the immune response. These cells can be taken from patients, expanded in the laboratory and used as a therapy. However, how they work is not fully understood. We are investigating how different types of regulatory cells can help to control kidney transplant rejection.

What is the best thing about Kidney Research UK? I love the opportunity the charity gives its researchers to engage with both patients Find out more: www.kidneyresearchuk.org

Lord Sharkey

VOLUNTEER PROFILE // P11

Sam Blackburn Sam is a transplant patient who fundraises for Kidney Research UK with his employer, Exclusive Net works. Their second annual charity football tournament in May was superbly popular. With members of staff also raising funds by competing in Tough Mudder and the Lon don Marathon, Sam is overwhelmed by his company’s support for Kidney Research UK

How long have you been a volunteer?

I’ve been a volunteer with Kidney Research UK for two years now.

I then joined the charity’s Lay Advisory Committee six months ago.

What are you up to at the moment?

At the moment I’m busy working, but in two days’ time I am due to finally have a transplant. Then it will be lots of relaxing and recovering.

What do you do in your spare time when you’re not supporting Kidney Research UK? I support Sheffield United quite religiously.

What was the last album you downloaded?

Solid Bronze by The Beautiful South.

Where did you last go on holiday?

I went to Florida three weeks ago. It was great, but a lot of hard work! I had to have my medical equipment shipped over and dialyse four times a day, using medical rooms at the theme parks.

What was the last film you watched?

I went to see a film called War Dogs at the cinema at the weekend.

Who would be your ultimate dinner party guests?

Sean Bean and Winston Churchill.

What is the best thing about Kidney Research UK? They are dedicated to fighting a disease that’s very difficult to fight.

What inspired you to become a volunteer?

As a kidney patient I felt that I wanted to give something back and support the work the charity does.

What is your favourite thing about volunteering?

As a kidney patient I felt that I wanted to give something back and support the work the charity does.

Getting to meet a wide selection of people and sharing the similarities in our conditions.

Best event you have volunteered at?

The yearly football event that I organise with the support of my employer, Exclusive Networks. This year we raised £22,000 for the charity.

SINCE TALKING TO US, WE’RE DELIGHTED TO REPORT THAT SAM HAS HAD HIS TRANSPLANT AND IS DOING WELL! Call our donation line: 0800 783 2973

RESEARCH ROUND UP // P12

Research round up – innovative projects funded by you

Through your support we are able to fund the finest research teams and inspire the most talented scientists.

Their work will help to make a real difference to the lives of people with kidney disease in the UK and abroad.

Help us change more lives Every year we plan to award around 50 new research projects, on top of our ongoing commitment to the numerous research projects already in progress.

Last year we had to turn down £2.4m of proposals that we really wanted to accept. Sadly we have to turn away exciting and potentially lifesaving ideas, because we don’t have the money to say yes.

Please help us fund even more ground-breaking projects – projects that could lead to possible cures or new treatments for kidney diseases.

Make a donation today at

www.kidneyresearchuk.org/donate or call: 0800 783 2973 THANK YOU

Image showing an abundance of small nerves in a mouse bladder

Find out more: www.kidneyresearchuk.org

Unlocking the secrets to a rare condition We are funding a three-year study that could help to prevent Urofacial Syndrome – a rare condition which is characterised by bladder dysfunction, kidney failure and an inability to smile.

The disease is usually diagnosed in childhood. It prevents the bladder from emptying properly, which forces urine back up into the kidneys. If left untreated, this can cause renal failure.

It is not currently understood why the bladder and face are affected but previous studies carried out by Dr Neil Roberts at the University of Manchester revealed that genes that normally allow nerves to grow in the bladder are going wrong.

Simultaneous studies by a USA research group initially identified a gene called HPSE2. Then the team in Manchester went on to find a second gene called LRIG2 and discovered that, although apparently unrelated, both can cause the disease when either gene is mutated.

In recent work involving two sets of mice with the defective genes, Dr Roberts found a significant over production of small nerves in their bladders. He believes that the presence of these extra nerves could be the key to this condition. They could be causing too much bladder contraction or preventing precise bladder control.

He will use our £200,000 research grant to test this assumption further, stimulating bladder samples chemically and electronically to see if they contract.

He will also look at and test potential ways to relax the bladder.

Dr Roberts hopes that his findings will lead to the development of new, more specific treatments and an eventual cure for the condition, possibly through the use of gene replacement therapy.

RESEARCH ROUND UP // P13

Using stem cell technology to understand abnormal kidney development

Seeking better ways to preserve kidneys prior to transplantation

A team of researchers at the University of Manchester will be growing ‘mini kidneys’ in the lab to help them work out why some people can be born with renal abnormalities.

Research has shown that pumping cooled nutrient-rich fluid into a kidney before transplantation – a preservation method known as hypothermic machine perfusion – results in less organ rejection than when kidneys are stored in ice. However, it’s not yet fully understood why this should be.

Professor Susan Kimber, Professor Adrian Woolf and Dr Ioannis Bantounas will take blood cells from people with healthy and abnormal kidneys and then add a series of known re-programming molecules to turn them into stem cells capable of building rudimentary kidneys. This will enable the team to grow immature kidneys, rather like those found in a developing foetus, which have key elements such as tubules and filtering glomeruli but are unable to become fully-formed kidneys.

Scientists believe that this may be due to the flow of liquid having a positive effect on the lining of blood vessels in the kidney. We gave a £5,000 Intercalated Degree grant to University of Birmingham medical undergraduate Will Ries to investigate further.

Developing mini kidney made from stem cells stained to highlight key renal elements

The grant has enabled him to take a year out of his degree studies to join Dr Christian Ludwig’s renal research group at the Institute of Biomedical Research, Birmingham.

Will Ries

They will then compare the growth of the healthy and abnormal ‘mini kidneys’, paying particular attention to cells that have a mutation in a gene called HNF1-Beta. This is known to cause cyst formation and other defects in the developing kidneys of unborn babies.

Using human and pig kidney tissue samples he has been able to directly compare the effects of the hypothermic machine perfusion method with the more common ice preservation method, known as static cold storage.

We have given a £251,813 award to fund the three-year study which aims to get a clearer understanding of how the defective gene affects kidney development. It could also identify other genes and proteins that may also be involved.

By using state-of-the-art magnetic scientific equipment he hopes to identify the specific molecules that are responsible for causing changes to the blood vessel linings and get a clearer understanding of how they work.

Professor Kimber hopes their findings will lead to the development of new therapies to make diseased kidneys grow more normally, possibly using drugs already in use for other conditions. This could eventually allow people to live free from dialysis and transplantation.

These finding will hopefully pave the way for further improvements to kidney preservation methods which could make more kidneys suitable for transplantation and make transplanted organs last longer.

Call our donation line: 0800 783 2973

OUR HEROES // P14

HOW to leave a

Gift in your Will to Kidney Research UK Leaving a charitable gift in your Will is far simpler than many people realise.

Helen’s gift for the future Lancashire-based volunteer Helen Rogerson loves ballroom dancing and playing the organ – she also loves to keep abreast of all the latest advances in renal research.

As a member of our Lay Advisory Committee, Helen helps to ensure that patient and carer knowledge, experience and priorities remain central to everything we do.

And, by deciding to leave a gift in her Will to Kidney Research UK, she will also enable us to help generations to come.

“I’ve met some amazing people through my work with the charity, including fellow kidney patients and researchers,” says Helen, who has lived with chronic kidney disease since her teens.

“I want to leave something for them so they can continue their incredible, mind-blowing research.

There have been so many medical advances in a relatively short period of time, so who knows what can be achieved in years to come?

“It was a very easy process to leave my gift to charity. I just drew up my Will with my solicitor and chose the percentage I wanted to donate. I’d definitely recommend others to do it too. Even if you can’t afford a great deal, if we all give something the total could be tremendous.

“Kidney Research UK has supported me so it’s marvellous to be able to give something back to help others too. To quote the title of one of my favourite tunes: If I can help somebody as I pass along then my living shall not be in vain. I think that sums up my philosophy perfectly.”

I’ve met some amazing people through my work with the charity, including fellow kidney patients and researchers.

Helen helping out at our Pint of Science event in Liverpool

Find out more: www.kidneyresearchuk.org

If you already have a Will, it might be as simple as adding a codicil to it. However, circumstances change, and if you made your Will a few years ago, it is always worth taking a fresh look at it to make sure it reflects your current wishes.

Once you have thought about how you can take care of your nearest and dearest in your Will, if you would like to include a gift to Kidney Research UK, the simplest way of including us is through a specific cash (pecuniary) gift, or a share of your estate (residuary gift).

To learn more about the essential wording you would need to include us in your Will, and how to find a solicitor who can help you, visit www.kidneyresearchuk.org/legacy The contents of your Will are private, as are your intentions for your estate.

However, if you choose to let us know that you have included a gift to Kidney Research UK in your Will then we would love to hear from you! Quite simply, this gives us the opportunity to say thank you for choosing to support us in this valuable way.

YOUR YOURMESSAGES MESSAGES// //P15 P15

Emma Parsons is a senior associate at the international law firm, Taylor Vinters.

She explains why will writing is important:

KIDNEY RESEARCH UK

Why writing a Will is a good idea

Stay in touch We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook, Instagram and LinkedIn. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or email: pressoffice@kidneyresearchuk.org.

Star Tweets Proud to have completed the Great Glencoe Challenge on Saturday. All money raised is going to @ Kidney_Research. @andyd_AF

“Astonishingly in the UK one in three people do not have a will, despite the fact that 92% of people know where they want their assets to go when they die.

People have a misconception that if you die without a Will then your estate will ultimately pass to your loved ones and, if this fails, then to charity.

However, this is certainly not the case.

Under the current rules if you die without a Will, leaving a spouse and children, then your spouse inherits all your personal belongings, a £250,000 statutory legacy and half of the remaining estate outright, free of inheritance tax. The remaining share of your estate passes to your children, sometimes with a large inheritance tax bill. In addition your spouse might be left with inadequate assets and through the rules you are unable to benefit any charities or other family members and friends.

The intestacy laws also fail to take into account the interest of unmarried couples, meaning unmarried partners can be left with nothing.

Therefore the only one way to ensure that your assets go where you intend is to make a Will and review it periodically. A solicitor can help you ensure that your intentions are fulfilled, and that your Will is as tax efficient as possible.

@StevieShaw1975

Star Facebook posts

My family are so important to me and give me a reason to carry on.

I walked for them with my hubby by my side.

Sarah Bayes

As I was unable to make it to London I decided to complete a walk closer to home today! 9.5 miles later...! We have donated the registration fees to Kidney Research UK. it feels like we’ve accomplished something great for a worthy cause!

Claire Bibby

Wills are also the only way that you can benefit charities on your death. By making either cash legacies or giving all or part of your estate to a charity, such as Kidney Research UK, you are able to support brilliant and worthwhile causes that are important to you. Outright gifts to UK charities are exempt from Inheritance Tax.

So if you want to ensure that your estate passes to your family, friends or charities in a tax efficient way then it is essential that you have a Will drafted and regularly reviewed by a professional.”

@sie_francis

Done my third Kidney Research Army Workout for @Kidney_Research. #Paras10. 10 grueling miles including a swamp and 2 rivers. #teamkidney

In addition your Will should be regularly reviewed by a professional to ensure that it still accurately reflects your intentions, your current situation and is up to date with law changes.

In addition if you leave 10% or more of your net estate to a UK charity, this cuts the rate of inheritance tax on the rest of your taxable estate from 40% to 36%. Therefore leaving legacies to charities such as Kidney Research UK could benefit both the charity, and the estate’s beneficiaries. As this can be quite a complex calculation it is worth seeking advice from a solicitor to ensure that you receive this relief.

Had a great time at the @Kidney_Research Newcastle Bridges Walk! Well done to everyone who took part. #TeamKidney.

Absolutely brilliant day today! Loved it:) my daughter Ashleigh had both kidneys removed in September 2016 and now on dialysis every night. My husband is 24 years post-transplant too. We were honoured to be part of it today:) Tanya Taylor

Youngest member to walk The Bridges of London.

3 week old Jed with Derek’s Dawdlers #teamkidney.

Angie Bedborough

Call our donation line: 0800 783 2973

£1

What would you do with £5,000?

Ticket Draw date 29 Sept 2017 at 3pm

Enter our Kidney Research UK raffle for your chance to win 50 fabulous prizes 50 fabulous prizes 1ST

£5,000 x1

2ND

£1,000 x1

3RD

£500 x2

4TH

5TH

x10

x36

£100

£50

Make sure you return your tickets by 12 noon on 28 September 2017.

We don’t want you to miss out!

Request your tickets for the draw visit: www.kidneyresearchuk.org/lottery or call: 0300 303 1100 If you already have your tickets, don’t forget to return them!

The raffle draw is open to all UK residents (excluding Republic of Ireland, Channel Islands and Isle of Man).

Tickets are not for sale to or by anyone under 16 years of age. Licence number: 000-004856-C-100 606-001.

Registered charity number: 252892 Registered Scottish Charity number: SC039245